What happens if we’re only prolonging death?

You have probably experienced, or know someone who has experienced, the difficulty of deciding what to do when a loved one is on life support and whether they should remain on it or be taken off. The burden of making the choice can be agonizing. What is life support? How do we do a better job of discussing it before it becomes a critical decision?


1119 Saving Lives TNLife support, or life-sustaining treatment, is when any medical intervention, technology, procedure or medication is provided to a person that results in delaying the moment of death. It prolongs life by supporting or replacing a failing bodily function. The treatments allow the person’s body to stabilize and resume normal functioning on its own. So, they are usually considered temporary because it increases the person’s chance of recovering from a curable or treatable illness or disease. The treatments can extend to your life, but do not cure your illness—your body needs to do that on its own. Sometimes, a person’s body never regains the ability to function without life support. When this is the case, life-sustaining treatments are no longer about recovery, but focus on making the person more comfortable during the final stages of a terminal illness. In either scenario, in order for a treatment to be considered beneficial, it needs to relieve suffering, restore functioning or enhance the quality of life. However, the very same treatment can be considered burdensome if it causes pain, prolongs the dying process without offering benefit or adds to the perception of a diminished quality of life.

There are many different treatments that fall under the category of life-sustaining. One is mechanical ventilation. This is when a machine (ventilator) forces air into a person’s lungs because their respiratory system isn’t functioning properly. The person is connected to oxygen via a flexible tube. The tube is inserted into the nose or mouth of the person and extends into the person’s trachea (passageway into the lungs). Another life-sustaining measure is dialysis. This is a process that uses a machine to filter harmful wastes, salt and excess fluid from the blood when the kidneys are no longer able to do so. Sometimes, this is temporary as is the case during an acute kidney injury. Other times, it’s permanent if the damage to the kidneys is significant and they aren’t able to recover. Artificial nutrition and hydration are when a chemically balanced mix of nutrients and fluids are given through a tube placed directly into a person’s stomach, upper intestine or vein because their ability to eat and drink is diminished. The primary uses for this are for individuals with serious intestinal disorders causing them to have difficulty digesting food and those with irreversible and end-stage conditions this is a form of long-term management and comfort providing measure. Cardiopulmonary resuscitation (CPR) is used to try and revive someone when they’ve stopped breathing or their heart has stopped beating. This isn’t only chest compressions, but can also include administering electric shocks and medications. It’s more likely to work when it’s used to try to revive an otherwise healthy individuals who experienced some reversible catastrophe that interrupts they’re normal breathing and circulation. It’s not usually successful in reviving people who are at the end of a terminal illness. It’s essential to note that any life-sustaining treatment will not reverse the course of a disease and, in some cases, might not improve the quality of life for an individual.

With all of these different forms of life-sustaining treatments, it makes the decision surrounding the use of them challenging. It’s a very personal decision because everyone has the right to control what happens to their body. A person’s wishes, expressed in advance directives (a written document that expresses a patient’s desires regarding end-of-life treatment) or clearly communicated to the doctor, their family or both, should be honored and protected from others’ attempts to override them. This is why it’s essential to have frank discussions about death and what you would like to have done or not done well before the time arises. The key is that the discussion is honest and covers all areas, including palliative care, which is a specialty that focuses on improves the quality of life near its end. Thankfully, nowadays, a patient’s autonomy in making end-of-life choices is more deeply respected, patients and families are somewhat better informed, and palliative care has become more widespread. Palliative care can be received even if a person has chosen not to get treated for their underlying disease. It is vital to note that an individual’s freedom to act in accord with personal religious values is one aspect of autonomy. Only in cases of a public health concern should it be necessary to override a patient’s refusal of antibiotics or other life-sustaining medications. In order to follow the patient’s wishes, their decision-making capacity needs to be established. This is a person’s functional ability to make informed healthcare decisions in accordance with their personal values and communicate their decisions with caregivers verbally or non-verbally. This determination of capacity is crucial to the ethical and legal concerns. When a patient lacks this ability, then a surrogate must be identified. A surrogate can be designated by a patient in a durable power of attorney for healthcare document. If needed in an emergency, it may be identified as the first available (in order): legal guardian, spouse, majority of adult children, parents, majority of adult siblings or other nearest adult relative. The primary function of a surrogate is to express the choices a patient would express if they were able to. Even when a surrogate is needed, any possible participation by the patient in the decision-making process is encouraged. It is important to note that when it comes to minors, treatment that is provided on what is in their best interest and will supersede a treatment decision requested by the parents (or legal guardian) when those decisions conflict.

Due to modern technology and treatment options, doctors are able to prolong life, or in some cases death, much more than they were able to in the past. Each patient is different and how their body responds to a disease is different not only from other people but from themselves, even if they have had the disease before. For this reason, doctors are unable to reliably predict exactly how much longer a person has when they’re terminal ill. As hard as it is to imagine, doctors often struggle with how to talk to patients about death and dying. It isn’t something that they are taught in medical school (although more schools are starting to focus on it).

In order to help you decided what to do about end-of-life treatment, you should talk to your doctors, learn about the treatments they recommend and how they would benefit you, learn about the possible side effects, assess what quality of life you would like to have, find out what happens if you choose to not start or stop treatment and if you will be in more pain with starting or stopping treatment. In addition to talking to your providers about your options, be sure to put your decisions in an advance healthcare directive (a physical document that dictates what you want done in the event that you become unable to relay this information), find out about a Do Not Resuscitate (DNR) order (a document stating that want you want done if your heart stops beating or you stop breathing) and ask someone to be your healthcare agent or proxy (make sure this person knows your wishes and inform them if you make any changes to your healthcare choices). It’s okay for your opinions and choices to change. You can alter or cancel your advanced directive at any time. Often, when discussing life-sustaining treatments, the terms “extraordinary” and “ordinary” are used in an attempt to differentiate between a class of treatments that may be ethically withheld or withdrawn from a class of treatments that may not. This can cause a great deal of confusion because no treatment is intrinsically ordinary or extraordinary.

A doctor’s job is to provide guidance, not order or command you to do something. Doctors shouldn’t impose their values on their patients. They should provide information that is relevant to treatment goals and values in a language that can easily be understood by a patient or their surrogate. If there are several staff members involved in the care of a patient, then they should consult with one another in order to send a consistent message in their communications with the patient or surrogate. The doctor and patient or surrogate should reach a consensus on the goals to be achieved and what treatments will be implemented to achieve them. These goals should be defined early in the treatment process. At any point that an existing goal or treatment is considered to no longer be achievable, then a consensus should be redeveloped around new goals and treatments. When possible, the doctor should present the prognosis and recommended treatments before a life-threatening crisis occurs and before the patient losing decision-making capabilities. As part of this discussion, the doctor should explain the reasoning behind the prognosis, the foundation for the recommendations, assure the patient or surrogate that every possible medical treatment option has been or will be tried and tried long enough to know whether or not it’s beneficial. Also, the doctor needs to make clear that if the patient decides to forgo treatment, they won’t be abandoned and will still be able to receive comfort measures. The doctor should notify all members of the healthcare team involved in the patient’s care the results of these discussions.

If you need to make a decision about stopping treatment for a loved one, talk to their doctors, review your loved one’s medical care goals, weigh the benefits/burdens of treatment, think about your loved one’s values/wishes, seek advice from other healthcare professionals (ex. social worker) and talk with other family members. It is essential to be aware of the fact that the modern makeup of families, that includes step-parents, step-siblings, half-siblings, can greatly impact a person’s healthcare because of the sheer number of people involved in the decision-making process. When you combine this with our fragmented medical system, it is a recipe for disaster. This is why it is key to have one person be the legally designated surrogate.

When faced with the decisions that surrogates have to make, many people are more accepting of withholding life-sustaining treatment over withdrawing life-sustaining treatment once it has been started. There is no legal or ethical difference between not starting treatment or stopping treatment and it’s legally and ethically appropriate to stop medical treatments that no longer are beneficial to a patient. However, most doctors will initiate a treatment provisionally with a plan for stopping it if the treatment proves ineffective or unduly burdensome to the patient. When it’s unclear, doctors will always err on the side of life and provide treatment, such is the case in the absence of DNR order, even if a person has said to non-medical personnel that they do not wish to be resuscitated. So, this means resuscitation is attempted. If there is any doubt as to whether a decision to forgo treatment has been properly made, treatment to preserve life will always be priority. A particular area that is difficult for surrogates to make is choosing to forgo nutrition and hydration because of the association these play in providing basic needs and human caring. It is important to note that dehydration can actually produce a sedative effect on the brain, which can make the dying process more tolerable. Another area that most surrogates are concerned about is if their loved one is in pain. This is where palliative care comes into play because they use analgesics, especially narcotics, properly and adequately, which is critically important in alleviating pain for dying patients. It’s essential to note that any concerns about addiction or physical dependence are irrelevant at this point.

Prolonging death can be a far worse fate than prolonging life. Good palliative, or hospice, care can alleviate suffering. An example of this is palliative chemotherapy. The primary purpose is to relieve symptoms, such as pain, but it can also prolong life. Curative management of cancer includes surgery to cut it out or radiotherapy to burn cancer cells with the intent to eradicate the cancer. Palliative approach is focused on relieve symptoms, but with advances in technology increasing the effectiveness of chemotherapy, the line has become blurred. Please be aware that any form of chemotherapy carries a very real risk of death and other significant complications. Sometimes, providing adequate pain relief to patients can hasten the process of dying. Making these decisions are not done impulsively and can place a burden on the person’s loved ones because the person is leaving them and it can happen sooner than it might have had the person not received medication. Some people, where it is legal, decide to end their life on their terms under the attention of doctor. For most people who decide to do this, it’s not about pain because that can be managed, it’s about not being able to do the things that they were able to do and enjoyed, which they view as a complete loss of autonomy and dignity.

As our ability to support life through improved monitoring, advanced pharmacology and more effective life-support techniques has grown, we increasingly run into the dilemma of whether we are prolonging life or prolonging death. There are patients that simply can’t be saved. They remain hanging perilously on the cliff of life and death. With life-saving treatments, they don’t fall off, but they can’t be pulled all the way back to higher ground. Even when they are made well enough to leave an intensive care unit (ICU), they end up back there a few days or weeks later because their bodies aren’t able to survive outside of the life-sustaining environment. This means they end up in agony for weeks or even months. If they are awake, they are in constant discomfort, chronically deprived of sleep and stripped of any dignity. Other times, they are sedated to the point where they are no longer able to communicate with anyone. If the best outcome is for a patient is to be bedridden, institutionalized and dependent for all activities, then we need to be certain that this would be acceptable to that person. Part of this process needs to involve frequent and open communication between various clinicians participating in the care of these critically ill patients. This will help to remind the clinicians that it’s human beings, not illnesses, being treated. Doctors need to do a better job of weaving palliative care strategies into their treatment of patients who are near the end of life. The focus of this should be to optimize the quality of the time remaining to them. Just having a patient survive is not a sufficient goal. What kind of living is this?

We as a society need to do a better job of embracing the fact that sometimes, stopping care is the best care. Avoiding death shouldn’t always be the foremost goal and not all technologically possible means of prolonging life need to be, or should be, used in every case. You have the power to choose what kind of treatment you want to receive. When making these decision, it’s important to keep in mind that it’s the illness or injury causing the end of life, not the lack of or removal of life support.